“Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick,” Susan Sontag wrote in Illness as Metaphor. “Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”
By the time I reached my last day of treatment for leukemia, in the autumn of 2015, I’d spent nearly four years—the majority of my adult life—in that other realm: the kingdom of the sick that no one cares to inhabit. Initially, I’d clung to the hope of a short sojourn, one where I wouldn’t have to unpack my bags. I resisted the label of “cancer patient,” believing I could remain the person I’d been. But as I grew sicker, I watched my old self vanish. In place of my name, I had been issued a patient-ID number. I’d learned to speak fluent medicalese. Even my molecular identity had morphed: After my bone-marrow transplant, my brother’s stem cells engrafted in my marrow and my DNA had irreversibly mutated. With my bald head, pallor, and the medical port lodged below my collarbone, illness became the first thing people noticed about me.
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As months bled into years, I adapted to the mores of this new land as best I could, befriended its inhabitants, even carved out a career within its confines. In its terrain, I built a home, accepting not only that I might stay there for a while, but that likely I would never leave. It was the outside world, the kingdom of the well, that had grown alien and frightening.
But for me, for all patients, the end goal is eventually to leave the kingdom of the sick. In many cancer wards, there’s a bell that patients ring on their last day of treatment, a ceremonial tolling that signals a transition. It’s time to say goodbye to the eerie and changeless fluorescence of hospital rooms. It’s time to step back into sunlight.
This is where I find myself, at the threshold between an old familiar state and an unknown future. Cancer no longer lives in my blood, but it lives on in other ways, dominating my identity, my relationships, my work, and my thoughts. I’m done with chemo but I still have my port, which my doctors are waiting to remove until I’m “further out of the woods.” I’m left with the question of how to repatriate myself to the kingdom of the well, and whether I ever fully can. No treatment protocols or discharge instructions can guide this part of my trajectory. The way forward is going to have to be my own.
My first foray into this new selfhood is learning how to drive. As I get more comfortable behind the wheel, a hazy idea begins to crystallize into a grand plan. I need to leave the familiar, to trust that I can navigate the world alone. I need to become my own caregiver. It took me a while to say I was a cancer patient. It’s time for me to figure out who I am now. By the time I finally pass my driver’s test, the next step is obvious: I’m going to embark on a solo cross-country road trip.
Over the next few weeks, I pack all of my belongings into boxes, put the boxes into storage, and sublet my apartment. I can’t afford to buy my own car but my friend Gideon generously offers the use of his old Subaru. Between the extra income from renting out my apartment and the $4,000 in my savings account, I should be able to make do. I plan to camp and crash on couches as often as possible, staying in only the occasional motel room. I scour Craigslist for secondhand camping gear and buy a portable propane gas stove, a subzero sleeping bag, a foam bedroll, and a tent. I pack all this, along with a crate of books, a first-aid kit, a camera, and a sack of kibble for my scruffy terrier mutt, Oscar, into the car. Before leaving, I go in for a last checkup with my oncologist.
My road trip will take me 15,000 miles across 33 states. It will last 100 days, the maximum amount of time my medical team has agreed to until my next follow-up appointment. As I turn the keys in the ignition and drive away from New York City, I realize that this is a rite of passage that I hope will bridge the distance between no longer and not yet.
Either my GPS is a liar or I am an erratic driver, but I always seem to take nearly twice as long as it predicts to get to where I’m going. “Take a right turn in—recalculating … ” its robotic voice says condescendingly when I miss yet another exit. My next destination, Columbus, Ohio, will entail my longest drive yet. The GPS predicts that, if I follow its barrage of orders exactly as told, I will arrive in nine hours and 21 minutes. Unlikely.
Since hitting the road, I’m on no one’s clock but my own.
Two weeks earlier, when I first left home, I was so tense that I regularly had to remind myself to breathe. Each minute behind the wheel presented new and overwhelming scenarios: Do I have the right of way? What does a blinking red light mean? Was that an Egyptian hieroglyph on the traffic sign? Lane changes and merging onto the freeway had proved especially stressful—an existential guessing game of will I live or will I not. But with each day, I am feeling more confident, and it has been at least 72 hours since another driver has honked at me in anger or bewilderment.
When I stopped to see my parents in upstate New York, my father showed me how, if I leaned forward in my seat while glancing into the side mirror, the curvature in the glass would allow me to see cars hiding in the blind spot. Now, as I roll along the interstate, miles fly by with newfound ease. Even Oscar seems more relaxed as he gnaws on a bone in the back seat.
After about three hours, I begin to flag, drowsy from the warm sun streaming through the window. Removing my shoes at a rest stop, I recline the seat as far as it can go and stretch my toes onto the dashboard. My fatigue continues to chase me, but instead of fighting it or chastising myself for my slowness, I close my eyes under the golden arches of a McDonald’s. I am trying not just to accept my body’s limitations for a change, but to savor the breaks I have to take because of them.
These pit stops end up being some of my favorite moments on the road—shifting me out of my swirling mind and into the present, anchoring me in this strange new body, and in new places where I otherwise would never have gone. A half hour later, I awake, revived. I’m able to log another 150 miles before I decide to break for the day.
I find a cheap motel on the outskirts of Buffalo, and as I wait for the receptionist to fetch my room key, I skim through brochures advertising boat trips along Niagara Falls. It’s a gray, dreary day. Oscar needs exercise but the only greenery in sight is a small strip of desiccated grass encircling the property. We jog loops around the parking lot to the whooshing soundtrack of tires plowing through puddles on the nearby freeway. Out of nowhere, hail begins pelting down on us. Oscar raises his snout and growls at the sky.
Inside, the room is surprisingly cozy, the lighting warm and inviting. I lay out bowls of water and kibble for Oscar and contemplate what to do next. The fluffy bed beckons, as does the prospect of curling up with a book, but even on a wet day after a 300-mile drive, a new part of me yearns to explore. I remember the brochures: Niagara Falls is only a half hour away and I’ve never been. I give Oscar a scratch behind the ears, then head to my car.
As I drive to the falls, my expectations lower with each tacky hotel and flashing casino I pass. Crammed parking lots flank the park entrance. By the time I find an empty spot, I’m having doubts about whether I want to stay at all, but I get out and stand in line to purchase a ticket to the Maid of the Mist, a tour boat that sails upriver past the base of the American falls and over into the U-shaped basin on the Canadian side. Donning a plastic parka, I board the enormous double-decker ferry with hundreds of other tourists. I have never seen so many selfie sticks in my life.
Squeezing through the crowd, I wedge myself into a decent viewing spot on the lower deck, my ribs pressed up against the starboard railing. Looking around, I can’t help but notice that I seem to be the only person unaccompanied by family or a significant other. Sightseeing alone, especially in such a crowded setting, makes me self-conscious. “I have friends, I swear,” I find myself wanting to tell the couples next to me. Of course, they’re too busy admiring the view to notice or care that I am on my own, but still I feel conspicuous and a bit lonely.
The feeling lasts only a few minutes. As the boat slices through frigid waters, the wind numbs my face and my self-consciousness evaporates amid the onrush of scenery. My solitude begins to feel luxurious: I can be fully present in a way I couldn’t be if traveling with a companion. Flocks of seagulls swoop overhead. As the falls roar into view, the hull of the boat begins to vibrate.
What I see before me is infinitely more majestic than anything I could have imagined. Endless gallons of water hurtle over a colossal cliff, smashing, pummeling, and kneading the river into a violent froth. As we approach, freezing water sprays the deck. My parka clings to me like Saran Wrap. Though soaked and shivering, I don’t budge. My senses are fully awakened, the world around me too glorious.
It’s impossible to confront something so vast and not feel awed. My diagnosis produced a similar effect, and made me wonder how it was I’d ever failed to notice the beauty of my surroundings or believed that life could be unremarkable. Walking to Mount Sinai Hospital for my first round of chemo, knowing it would be my last time outside of a hospital room for weeks, I noted every detail, from the shading of the sky to the feel of the breeze on my neck.
I thought that this new appreciation would stay with me forever, that once I saw, once I knew, how everything could change in an instant, I would never again take such things for granted. But over time, my field of vision narrowed to the size of a ward, then a bed. Walled off from the outside, I had no choice but to turn my gaze inward. Once I was finally released, the threat of imminent death behind me, I only collapsed even further into myself. I stopped paying attention. Here at the foot of the falls, I’m reorienting my gaze outward again.
This piece is adapted from Jaouad’s recent book Between Two Kingdoms: A Memoir of a Life Interrupted.
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The Road Between No Longer and Not Yet - The Atlantic
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